I hate putting symptom stuff on Twitter but going to bc it’s so consistent & weird & I need insight:
When I get accidentally overdo it physically/with cardio, I get a feeling of my brainstem being in a grip & my head filling up with pressure. 1/
#NEISvoid #LongCovid #pwME
The brainstem sensation is most specific - it feels like someone is gently squeezing it, or like someone had previously hit me in the back of my head.
In the worst times, but not always, this comes with vertigo and vision issues.
It doesn’t seem like PEM bc it’s instant. 2/
An example: I lugged a suitcase up 4 flights of stairs, & my heart rate hit 150 (I know, I wasn’t thinking).
By the top of the stairs I had the brain feeling and it lasted for about a day (was in bed the whole time). 3/
Weirdly, I also occasionally get this feeling with certain medications (like ambien) and sometimes will wake up with it (possibly from sleeping on my back?) The frequency has increased over time. 4/
I have referrals for a cerebrospinal fluid MRI and a brain CT scan; I already know I have low lying cerebellar tonsils but don’t seem to have Chiari. Any other directions I should be looking into? 5/
#mespine
One of my doctors thinks there might be cerebrospinal fluid building up/not draining adequately; is there anything that can be done to treat that? 6/
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